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Author
Topic: Need Help (Read 10300 times)

I live in Orlando Florida and it seems like every where I turn to get help I get turned around right back to the health department which is a damn joke here.. In May my health got really bad I went to the health department and my cd4 count was 21 and vl was 280k the do to put me n atripla which wasn't a good thing I had a real bad reaction to it and stop taking it.. I had thrush so bad once again I went to the er to get meds to clear it up and a week after that I went back to the health department and she sent me to a outside lab so she can see me in three weeks did the blood work and the health department cancels my appointment like always now once again I go back to the er and they tell me that my cd4 is now 5 I don't remember what vl was..I don't know what to do anymore I am about to just give up every place I have gone to or called sends me back to the health department...I lose my job in May because of my health I applied for ssi and was denied I don't want the money just the health benefits... I have gone from making over 60 k a year to broke living with my sister and advise on how to get to see a doctor fast would really help thank you

Your situation sounds pretty terrible and would require you to act fast. I also live in Orlando Florida and have recently gone to Orlando Immunology Center which treated me very well...although I have insurance. But with the ACA you should be able to purchase insurance for a fair price....It's your life we are talking about here....

You may want to contact them and tell them your story and how its urgent you get care or see someone immediately as you are in dire need. I know the have case workers and people who are probably the most knowledgeable in Orlando.

BTW, I'm no expert but I'm pretty sure you are not supposed to stop taking Atripla just because you want to. You have to keep taking it until you see your doc so that he can switch you to something else....The thrush is probably because your CD4 is so low...but that is just a guess from me. You definitely need help so do not delay.

I lived in S. Florida for 12 years and I sympathize with your frustration with the Florida Health Dept. I'm not familiar with Orlando, but you do have access to a case worker and I suggest you find one ASAP. They can help you find which programs you may be eligible for, such as ADAP or Ryan White and direct you to providers that work with the HIV community.

I would check the listings for the Health Dept. and find out how you can obtain a case worker. If there is an ASO (Aids Service Organization) in Orlando, they could also assist you in finding a case worker to help manage your care. Whatever you do, do not take no for an answer and keep pushing until you get the help you need.

You could also check to see if there is a HIV Planning Council in your area and they would be an excellent source of information as well.

I'm with Joe and Goforit. You need to get yourself a case worker and you need to do it ASAP !

Use this link ( below), to possibly locate some help in your area. Put in your zip-code in the bottom portion and "select" --"AIDS SERVICE ORGANISATION" in the dropdown, and see what results come up. Choose a larger mileage radius if need be.

Also, who was this doctor that prescribed Atripla to you? Was he in the health dept? Or did He/she have a private practice? Can you get back to see him/her again. Did you just stop taking the atripla, without the knowledge of the doctor, and just stop seeing this doctor altogether in frustration, and because of the reaction to Atripla?You should have immediately contacted him if you were having a bad reaction.

I would try to get back to the original doctor that gave you the prescription in the first place. There are alternative treatment options available to you. Did he not discuss this with you?

Goforit I called the place on mills that you talked about and because I have no insurance they will not see me... After posting my post I gt in the car and set out to go beg the health department well after begging the right person I will see my so called case manager tomorrow morning at 7:30 am and then hopefully see the doctor...I will let you all know how it turns out...I am moving to upstate New York at the end of dec and I made so phone calls to there and within a hour I had a appointment to see a case manager and to see a doctor two days after I get here I was offered housing as well which I don't need.. I just want to get on some meds and to feeling better so I can go back to work...

J.R.F The doctor that first put me on the atripla retired it was the first time I was on meds I was on it for a year and then the health department started acting funny with funding for meds so I stopped taking going up there I went on living life and in Feb of this year I started getting really sick with thrush it was so bad I could eat or drink so I went back to the health department and it was very stressful the doctor that I use to see retired they gave me a new lady doctor who was more into weather I got the virus from a man or a women I explained to her I was a transsexual I have implants so I am not into women like that. She put me back on atripla and I didn't even know who or where I was I could get out of bed and of course I had a friend come over and take me to the health department and got the run around there...I don't understand Orlando

Goforit I called the place on mills that you talked about and because I have no insurance they will not see me... After posting my post I gt in the car and set out to go beg the health department well after begging the right person I will see my so called case manager tomorrow morning at 7:30 am and then hopefully see the doctor...I will let you all know how it turns out..

Sounds good ! Keep us updated Chyna ! If you have questions this is a good time to write those questions down, so you have them ready tomorrow, for your case worker. And, if you see a doctor tommorw, make sure to mention the difficulties you had with Atripla.

I'm sorry to hear about the problems and poor treatment you are experiencing. Orlando, with all that tourist tax money, doesn't have one of the best HIV practices for those who may not be able to afford it? The health department runs medical practices there? That is mind boggling, to me.

About the SSI-- just like with SSDI, something like 2/3 of apps are denied. And, somewhere around the same number for the first appeal. Many have to go before a judge, before they can get it. Of course, it really helps to have medical records. For those who have just lived with their illnesses and couldn't afford to see docs, they are at a disadvantage. I would keep pursuing it. I think there is only about 60 days to appeal, before you have to start all over again.

I really hope things get better for you. Like others said, don't take no for an answer.

I don't have much to add to what others have already said. I really hope to hear back from you after your appointment. You need meds now.So sorry to hear of the frustrating experiences you have been going through.Wishing you my best.

As I promised everyone that responded to my post I would update on what happened today at the health department... I didn't get to see my doctor but I did see another doctor who gave me two different meds for the thrush... I go see my doctor on Monday at 8:45am... So for now I will be able to eat again.. This has been so scary for me I want to get better and want to live I have a great Pitbull who loves me to death I need to be here to take care of her because gods knows when I can't get out of bed she will lay next to me all day.. I will post another update on Monday once I come back from seeing the doctor... Thank you all for the advice and love you all

Glad they were able to do something. You *really* need to get one something to take care of the viral load as soon as possible, as well as some other precautions until your numbers improve. Your doctor will be able to help with that.

With your current numbers, you probably will have more side effects than most as your immune system builds itself back up. No way around it, you will likely have a tough time of it at first. That is sure to make you sometimes feel like not adhering to your treatment regiment, but please push through. You can be optimistic that it is not a perminant situation, and that it will get better eventually.

Just remember that you merit treatment like anyone else. I wish you the best in getting through this and your move to NY.

But if you smoke, you should give it up while on the thrush medication, also, no drinking of alcohol. Diflucan ( which i am guessing is one of the drugs you are on, should not be combined with alcohol.

J.R.I. They did give me diflucan and mycelex after taking them the next day was wanted to eat everything that wasn't nailed down which is a good thing for me because of my weight being no low... I also noticed that since starting the meds for thrush that my runs have all the sudden stopped. I am not able to eat something without running to the bathroom 10 mins later..

Pittman I never thought that because my vl was so high and my cd4 are so low that they might be the reason I was having very bad side effects. My doctor that I see isn't really a big help either all it can do at this point is wait it out and get on some type of meds to get my vl down until I get to upstate New York where I will be seen by some of the best hiv and aids doctors in the world

J.R.I. They did give me diflucan and mycelex after taking them the next day was wanted to eat everything that wasn't nailed down which is a good thing for me because of my weight being no low...

I knew these medications would work fast, I wasn't in a much different situation, than you are now, 10 years ago. I was the same way,... I couldn't stop eating. My weight was also low. I lost about 35-40 lbs in one year, but I got it all back pretty quickly.

Did they also give you either "Septra." " Bactrim", or Dapsone. ( Septra and Bactrim are basically the same).

Because of your low t-cell count you really need to be on one of these 3 medications as well.

If not, the Doctor should/will most likely prescribe you one of these 3 on Monday.

J.R.E. I am on septra three times a week I take them Monday,Wednesday,and Friday. The other one that I am on is Zithromax 600 mg twice a week I take them Tuesday and Thursday. I am glad to hear that someone else has been in the same spot as I am in and as you said in your post that was over 10 years.. I have been feeling like I don't have much longer to live now I feel like I have many more years left to go. You don't know what it means to me to hear that things will be ok from someone that has been where I am at now.. As far as weight I lost 70 pounds since may of this year

MitchI just want to be able to be normal again well my normal that is. I lost my job because of my health I have lost everything that I have worked so hard for my house and two cars but those things really don't matter I got them once I can get them again just as soon as I get better.. I wish I would have came to this form sooner because now I know more about the virus then I did before now come Monday I am not leaving the doctors office until I have some new meds ...

MitchI just want to be able to be normal again well my normal that is. I lost my job because of my health I have lost everything that I have worked so hard for my house and two cars but those things really don't matter I got them once I can get them again just as soon as I get better.. I wish I would have came to this form sooner because now I know more about the virus then I did before now come Monday I am not leaving the doctors office until I have some new meds ...

That's what I wanted to hear. When you are feeling up to it I would suggest you explore this site to learn more. I know you will get better once you are meds. No time for delay.Wishing you my best!

J.R.E. I am on septra three times a week I take them Monday,Wednesday,and Friday. The other one that I am on is Zithromax 600 mg twice a week I take them Tuesday and Thursday.. As far as weight I lost 70 pounds since may of this year

Hi Chyna...

Also glad to hear that you are on Septra and Zithromax. ( I was on Zithromax also, along with Dapsone)

I would have to go back and check , my records, but I think I was on Zithromax, for about a year. The Dapsone, I was on until the tcells got to 200, and maintained. ( also, just a little over a year, If I remember.

With the Zithromaz and Septra, that you are taking I would suggest that you get a supply of yogurt products, and have them on a daily basis.

Now you have to get on the HIV medications, and get your immune system rebuilt !!

MitchI see the POZ mag. At the health department al the time and I would read it while I was waiting I didn't know about the forms until the other day and to be honest with you because I am a transsexual I was worried about posting in here because I know there are some people in the gay community that doesn't accept transsexuals.. No I am seeing that in the end we are all here to help each other and not to judge

MitchI see the POZ mag. At the health department al the time and I would read it while I was waiting I didn't know about the forms until the other day and to be honest with you because I am a transsexual I was worried about posting in here because I know there are some people in the gay community that doesn't accept transsexuals.. No I am seeing that in the end we are all here to help each other and not to judge

A belated welcome to the Forums . You will not find judgment here so please feel safe and welcome . Glad you found us .

MitchI see the POZ mag. At the health department al the time and I would read it while I was waiting I didn't know about the forms until the other day and to be honest with you because I am a transsexual I was worried about posting in here because I know there are some people in the gay community that doesn't accept transsexuals.. No I am seeing that in the end we are all here to help each other and not to judge

What Jeff said and a belated official welcome from me too.

PS- My nephew has become my niece and I could not be more happy for her.

Mitch, J.R.E.As I promised I would keep you updated. Went to the doctor this morning and once again what a damn joke but never the less I was there to get meds and live. For whatever reason the lab didn't genotype my last labs which my doctor ordered the doctor didn't want to wait to put me on meds because my vl was so high and my cb4 are super low so she put me on Norvir 100mg Truvada , and Prezista 800mg...so let's hope they help... If anyone has use this combo or has any advice please let me know....once again to everyone who came me input and said that there is light at the end of the tunnel

Mitch, J.R.E.As I promised I would keep you updated. Went to the doctor this morning and once again what a damn joke but never the less I was there to get meds and live. For whatever reason the lab didn't genotype my last labs which my doctor ordered the doctor didn't want to wait to put me on meds because my vl was so high and my cb4 are super low so she put me on Norvir 100mg Truvada , and Prezista 800mg...so let's hope they help... If anyone has use this combo or has any advice please let me know....once again to everyone who came me input and said that there is light at the end of the tunnel

Hi Chyna,...

I can't comment on the regimen you were placed on, because I've never been on the regimen. ( Actually, I was on Viread, which is part of Truvada. )

As far as the Genotype,( or phenotype) ... I never had either one done. And I know others that have never had one done. I was prescribed the regimen, that I am currently on, and it's been 10 years now., also because at that time my tcell count was low and viral load was high.

Ray I started my meds this morning now we wait and see. The Prezista she has me on is 800mg. The thrush is gone but stil taking the meds for it. My doctor told me since it's gone to stop taking it and if it comes back to restart the meds I really don't like that thought because since being on the thrush meds the runs that I was having have stopped. I felt like a kid waiting for Xmas morning to take my pills I know it sounds crazy but I turn 38 years old next month I want to live I am not ready to die. Now I know I can come to when I have questions once again thank you so much.. I will keep you updated I go see the doctor again after thanksgiving I will let you know how it goes

Ray My doctor told me since it's gone to stop taking it and if it comes back to restart the meds I really don't like that thought because since being on the thrush meds the runs that I was having have stopped.

I know exactly what you mean !! And i certainly would not go against anything that your doctor is suggesting that you do.

When I was in that place, that you are now, I finished the prescription of Diflucan. I didn't want the thrush to come back either. Unfortunately, even after I finished the prescription I did get some minor thrush back in the mouth, and one more prescription took care of that.

At that time, I was also on Valtrex, the HIV medication, Zitromax, and Dapsone.

Things are going to get better. Having started on your regimen, the virus is now having it's ass kicked !!

So, let the meds do their thing, continue eating, if you have any problem with food, try comfort food !

I also, during that period of time was drinking BOOST and ENSURE, anything to help get the weight back on. This stuff worked well for me.

I felt like a kid waiting for Xmas morning to take my pills I know it sounds crazy but I turn 38 years old next month I want to live I am not ready to die.

Chyna, it's not crazy !! I know exactly what you mean here too. ! I couldn't get to Walgreen's fast enough to fill the prescriptions after the Doctor wrote them out. Within several hours, I had already taken my first dose, and within days, started noticing how much better I was beginning to feel.

One of the first things I noticed after starting meds, was my energy levels came back quickly, and I wasn't as tired as I had been. And the appetite keeps getting better,

You'll do OK !! Make sure to rest when you are tired. The body heals much better if you get a good 8 hours of sleep every day, so, ...rest when you need to.

Did you get a pill box for your meds. You may want to get one, they help, to keep you on track, so you won't forget your doses.

Very belated welcome, dear heart. Well I am so sorry you have had such a differcult time just getting the health care you need . So if I understand correctly you have already set up your med needs when you move to up state NY and what is the name off your dog? You will discover some committed dog people here and some people who think we should be committed.Take carem

Logged

"If we can find the money to kill people, we can find the money to help people ." Tony Benn

TheyerYes I already have everything set up for my move I will see a case manager and a doctor all the same day the lady told me I would be there from two to five hours. As for as my dog I have two the one who's alway a pain in the butt because she has to be touching me her name is a Evie and she's a Pitbull I also have a 8 month old Great Dane who is just a goof ball.. My dogs are spoiled brats

Ray I wish I could drink Ensure or Boost milk and me don't get along at all.. I am going to get a pill box tomorrow after work. Yes I said work I am back to working just a few hours a night my boss knows about my health because I worked for her before and she is fine with it as long as I don't over do it.. Ray I took then meds this morning and went to sleep I got up felt ok then went to eat my stomach was turning so I waited it out and I was able to eat. Now as far as my next labs she said after thanksgiving I have to wait for them to call me for my appointment but if I don't hear from them by Friday I will be going up there first things Monday morning to see what's going on....

So glad to hear you are successfully navigating the clinic challenges and now started on treatment. I hope for the best with your progress and your upcoming move!

If you find that side effects pop up, I suggest that you talk to the doctor and/or nurses as they may have tips for reducing the impact of them. I would also encourage you to be patient as they may actually become more tolerable or even go away with some time. With your current low CD4 numbers, your body may not currently be responding to some of the conditions/infections you may have and not even realize. As your immune system builds back up, it may then start to more active?y and successfully fight to protect you, and just like with a cold or allergies, you will notice the fight your body is putting up more than the underlying condition. If this occurs, it is generally temporary and actually a GOOD sign.

As your immune system builds back up, your doctors will most likely start giving you booster shots as they will become more effective than when you get them now.

To AllJust wanted to wait a few days before I gave a update. Well it's been four days since starting my meds and I feel great so far the only side effect that I have had was diarrhea but have noticed that it's not as bad as it was the first day.. If that the only side effect then I can live with that. Once again thank you who gave me support when I felt like I was at my lowest

To AllJust wanted to wait a few days before I gave a update. Well it's been four days since starting my meds and I feel great so far the only side effect that I have had was diarrhea but have noticed that it's not as bad as it was the first day.. If that the only side effect then I can live with that. Chyna

Hi Chyna...

Make sure to check out this lesson in managing diarrhea, it may help. Glad to hear that things are going well !!! :

Well it's been about two weeks since I last posted. I have been taking my meds everyday like I am suppose to. Now today all hell broke lose the thrush is back in my throat I have a fever I am not to sure what to do any advice?

You still have medicine for the thrush right? Well I would start taking it again. And your fever is it a low one? Did you take your temperature? If it is a very high fever like 103 I would go to the emergency room. If it's a low fever like 98 or 99 I would wait it out. What you're probably experiencing is what my Dr calls the virus "expressing itself"". As the new meds fight the virus in your body it fights back and you may experience fever and chills. Your t-cells aren't high enough yet to fight the thrush on their own so you probaly stiil need meds for the thrush. It's probably just a minor setback.

BUT - I'm not a Dr - this is my own experience. SO - Call your Dr! But if you don't have a high fever relax.

Yes I have the diflucan I took one last night and one today the one today I threw up.. Omg throwing up was so bad.. Tomorrow I am going to see if I can get in to see the doctor... Since I have been on these new meds I have t had any side effects but a touch of diarrhea but that was it